All about three months ago I was sent to the VA War Related Illness & Injury Research Study Center (WRIISC) in Washington, DC after all my VA providers could absolutely not figure out what was wrong with me. I experienced a very serious and rapid decline in physical health involving numerous etymologies after a VA hospitalization about a year ago for 7-8 days. I began complaining of symptoms about a week out of the hospital. Nobody took me seriously. I continued to decline until I basically conned one of my VA providers into getting me in to see a neurologist. The neurologist, actually was the only one who took me seriously, and ran numerous blood tests. He actually thought I had Lyme Disease. As it turns out I had a completely different issue that required, and he recommended Mental Health address immediately, as well as recommending I see a rheumatologist as soon as possible. First I will discuss MH- MH refused to see me immediately. I had my psychologist and others try to get me in all to no avail. Eventually, I wrote VA SEC McDonald and my congressman- within days, I had a MH appointment and had all my meds changed. Also the Chief of Staff of my local VA system was supposedly personally tracking my case- which in actuality was actually nothing more than lip service to the powers that be. Well as it turned out, my med change fixed the issue that the neurologist found, however I still continued to deteriorate at a very rapid rate. I ended up in the VA emergency room numerous times, and eventually had to have a "handicap placard" issued along with a cane as my balance would go out for weeks and for three straight months I could not drive for two weeks out of every month. I tired vainly to get in to see a rheumatologist, which you think would be easy considering the Chief of Staff was supposedly tracking my case, but that is not at all what happened. I had to wait four months to see the rheumatologist, as our VA system only has one serving over 16,000 veterans- believe it or not. In the interim I went to see a Infectious disease doctor, and they also found nothing. Furthermore, I saw audiology and had balance testing done. When I went to see ENT for results all they told me was I had an infection in inner ear that should resolve on its own, and at first did not even know how to find audiology test results. (More on that later!) As time went on not only did my ear continue to hurt but my jaw as well. Went back to see ENT and they put me on a massive dose of predizone for a week. It was the first time in over 7-months I actually felt good for about 4-weeks and could actually leave my house to get out and about- which I really had not done much at all since this all started. However, after 4-weeks, my ear and jaw started hurting again and my physical symptoms reappeared. I was diagnosed with TMJ and given injection twice. Finally, time rolled around, and I got to see the VA rheumatologist. He spent over two hours with me, and went through all my labs since 2012. He found among other things that I had, had blood in my urine for over three years that the VA never told me or tested me for. He also spent about 1/2 hour discussing the effects of the illness I was hospitalized for and its effects on both the brain and body- he even looked in a data base and said I had every symptom listed. He then tested my for fibromalygia- and when he pushed certain places on my legs I about collapsed in pain. He then concluded that I did I have fibromalgya and bursitus. More on this later.
Well after about this time I had my phone interview with WRIISC. It was a social worker and neuro-psycholgist that interviewed me. It felt like a CIA interrogation as they knew my whole military and medical history- I actually wanted the social worker to stop asking questions and just ask me what about me she did not know that she wanted to know, but I had to play the game. Furthermore, the neuro-psycholgist tnever asked me one question, which I found exceedingly odd except at the end if I would volunteer for some testing as he had some interns to train. I agreed. Of note- they asked me how much I smoked and how much coffee I drank, I told them as I have told all my local VA providers, the same thing. The interviewer said she was extremely concerned about this- which set off warning bells in my head, immediately, but once again I said nothing.
Now to the interesting part, 3-days before I was supposed to leave for WRIISC the VA rehumatologist, previously mentioned, called me about 1930 at night, believe it or not. He said I have good news, I read the neurology note from six months ago and you do not have fibromyalgia- your problems are all caused by your MH meds- once again I said nothing. The next morning I secure messaged the neurologist and told him what the rehumatologist said. He immediately fired a note to the rehumatologist and said that was not at all what he said. Now mind you- this rehumatologist, that spent two hours with me, and told me I had blood in my urine for three years not only put in my notes that I had only had blood in my urine for several weeks, and failed to mention at all the 1/2- hour conversation we had about all the effects of the illness I was hospitalized for. Furthermore, as I have mentioned in other posts, he accused me of taking Drano in a separate note- which the interviewer from WRIISC actually questioned me on, believe it or not.
I am now ready to leave for WRIISC, after spending about 4-hours filling out all the questionnaires they sent me, outlining my combat experiences and environmental exposures, which are numerous, to say the least.
I am dragging on so will, cut to chase at this point. WRIISC really did nothing to me that my local VA providers did not do. As a matter of fact two things- the neuro-psychologist second guessed everything I told him that had already been proven and verified by numerous other providers over the years and fully documented in the extreme. Second, after another staff member telling me I was the first veteran they had seen with as much actual real combat experience as I had (provided letters by a former 3-Star, 2-Star, Full Colonel, and two majors- documenting and confirming my experiences in OIF in the heart of the Sunni Triangle) all they would come back to is coffee and cigarettes- as my problem. (See attached.) Oddly, enough the only person at WRIISC that listened to me, and my valid recommendations was a PHD pharmacist. Furthermore, and I have looked, they did not check my blood for caffeine nor nicotine levels.
I sent the attached report to all my local VA providers as soon as I got it and they were in total disbelief and shock. Oddly, since I have been back several of my providers have refused to speak with me or even implement the valid medication changes recommended.
Thanks, to the efforts of Jason Perry, I am not now bound to the VA system. I have seen several civilian providers and here is what they have said. First, I showed VA audiology report to civilian ENT- he immediately said, the report showed I had a 30% weakness in my ear, that was most likley causing my balance issues- something you think the VA would have told me long ago. Next another provider, checked my blood specifically for caffeine and nicotine levels, less than a week and a half after I was back from WRIISC among other things- and my caffeine and nicotine levels were all within normal limits. However, my white cell count was still all over the place. Totally unsolicited by me, this civilian doctor, said she was 100% sure I had some kind of infection, not in my blood but in my tissue as a result of my hospitalization a year ago, and if it was not that it was something I picked up in Iraq.
Currently, I am yet again under the care of one of the best civilian infectious disease doctors in my area and am on a very heavy dose of anti-biotics. Oddly enough I am starting to feel normal again slowly but surely.
Here is the real issue with WRIISC: on paper the staff look like medical Einsteins- see below link to their resumes:
http://www.warrelatedillness.va.gov/about-us/who-we-are/dc-wriisc.asp
However, if one were to do a little more digging on some of them you would be surprised at what you would find is all I am going to say.
I will post original WRIISC note at a later time, however one can draw their own conclusions from my story/experience at this point in time.
All will say- is if this option is ever offered to you I would personally advise considering other options before going this route.
Well after about this time I had my phone interview with WRIISC. It was a social worker and neuro-psycholgist that interviewed me. It felt like a CIA interrogation as they knew my whole military and medical history- I actually wanted the social worker to stop asking questions and just ask me what about me she did not know that she wanted to know, but I had to play the game. Furthermore, the neuro-psycholgist tnever asked me one question, which I found exceedingly odd except at the end if I would volunteer for some testing as he had some interns to train. I agreed. Of note- they asked me how much I smoked and how much coffee I drank, I told them as I have told all my local VA providers, the same thing. The interviewer said she was extremely concerned about this- which set off warning bells in my head, immediately, but once again I said nothing.
Now to the interesting part, 3-days before I was supposed to leave for WRIISC the VA rehumatologist, previously mentioned, called me about 1930 at night, believe it or not. He said I have good news, I read the neurology note from six months ago and you do not have fibromyalgia- your problems are all caused by your MH meds- once again I said nothing. The next morning I secure messaged the neurologist and told him what the rehumatologist said. He immediately fired a note to the rehumatologist and said that was not at all what he said. Now mind you- this rehumatologist, that spent two hours with me, and told me I had blood in my urine for three years not only put in my notes that I had only had blood in my urine for several weeks, and failed to mention at all the 1/2- hour conversation we had about all the effects of the illness I was hospitalized for. Furthermore, as I have mentioned in other posts, he accused me of taking Drano in a separate note- which the interviewer from WRIISC actually questioned me on, believe it or not.
I am now ready to leave for WRIISC, after spending about 4-hours filling out all the questionnaires they sent me, outlining my combat experiences and environmental exposures, which are numerous, to say the least.
I am dragging on so will, cut to chase at this point. WRIISC really did nothing to me that my local VA providers did not do. As a matter of fact two things- the neuro-psychologist second guessed everything I told him that had already been proven and verified by numerous other providers over the years and fully documented in the extreme. Second, after another staff member telling me I was the first veteran they had seen with as much actual real combat experience as I had (provided letters by a former 3-Star, 2-Star, Full Colonel, and two majors- documenting and confirming my experiences in OIF in the heart of the Sunni Triangle) all they would come back to is coffee and cigarettes- as my problem. (See attached.) Oddly, enough the only person at WRIISC that listened to me, and my valid recommendations was a PHD pharmacist. Furthermore, and I have looked, they did not check my blood for caffeine nor nicotine levels.
I sent the attached report to all my local VA providers as soon as I got it and they were in total disbelief and shock. Oddly, since I have been back several of my providers have refused to speak with me or even implement the valid medication changes recommended.
Thanks, to the efforts of Jason Perry, I am not now bound to the VA system. I have seen several civilian providers and here is what they have said. First, I showed VA audiology report to civilian ENT- he immediately said, the report showed I had a 30% weakness in my ear, that was most likley causing my balance issues- something you think the VA would have told me long ago. Next another provider, checked my blood specifically for caffeine and nicotine levels, less than a week and a half after I was back from WRIISC among other things- and my caffeine and nicotine levels were all within normal limits. However, my white cell count was still all over the place. Totally unsolicited by me, this civilian doctor, said she was 100% sure I had some kind of infection, not in my blood but in my tissue as a result of my hospitalization a year ago, and if it was not that it was something I picked up in Iraq.
Currently, I am yet again under the care of one of the best civilian infectious disease doctors in my area and am on a very heavy dose of anti-biotics. Oddly enough I am starting to feel normal again slowly but surely.
Here is the real issue with WRIISC: on paper the staff look like medical Einsteins- see below link to their resumes:
http://www.warrelatedillness.va.gov/about-us/who-we-are/dc-wriisc.asp
However, if one were to do a little more digging on some of them you would be surprised at what you would find is all I am going to say.
I will post original WRIISC note at a later time, however one can draw their own conclusions from my story/experience at this point in time.
All will say- is if this option is ever offered to you I would personally advise considering other options before going this route.